Letter of Intent

The time to write the letter of intent is now, even if your child is very young.

What Is a Letter of Intent?

A letter of intent if your vision of your child’s future, in writing. It is a good place to start the planning process, but is not a legal document. Instead, it gives professionals, support providers, and advocates information about the history, current status, and your hopes for the future of your child with intellectual disabilities.

What Is Its Purpose?

The letter of intent’s primary purpose is to serve as information and guidance for those who will support your child after you are gone. It should, however, be written now, regardless of the your child’s age. This can help avoid chaos and legal battles should something suddenly happen to you or your child’s current caregivers.

Who Should Write One?

You as the parent(s) would typically write the letter of intent, but anyone close to the individual with intellectual disabilities can do this.

Writing a letter of intent can be an emotional experience, as it includes a summary of the child’s life and your wishes for the future. Differences of opinion can surface when making plans for the future, requiring families to find a compromise.

Even adult children may not be comfortable talking about what will happen when their parents are gone. Parents, too, may find this disconcerting. Be ready for the process to  take determination and time, but know that the results will be worth the effort.

How to Write a Letter of Intent

  1. Include Your Child in the Process: This ensures that the letter honestly represents him or her. The child’s level of participation will, of course, depend on age, ability to communicate, and comfort level with the task.
  2. Get Input From Circle of Support: Your child’s circle of support should be included in writing and revising the letter of intent. Their input can add perspective and is a great way to engage your child’s support network.
  3. Keep a Notepad Handy: The first draft may take a long time to write; it’s impossible to think of everything in one sitting. Jot down notes on a pad kept close at hand an incorporate them as needed.
  4. Choose a Format: There is no specific format for the letter of intent. A typed document saved on a computer is recommended for easy updating.
    • If a “Life Plan” has also been written, it can be included with the letter of intent, eliminating the need to repeat the information.
  5. Be Clear: Careless wording can cause confusion. Don’t use idioms, slang, or nicknames without explanation.
    • Example: Records of a woman who moved into a group home indicated that she had “false teeth.” For 3 days, staff tried diligently to get the woman to take her teeth out so for cleaning. Finally, after many tears, the staff asked the woman’s parents if they knew why she might be resistant to taking out her teeth. The parents explained that she had permanent implants, not removable dentures.
  6. Keep It Safe and Accessible: The letter should be accessible in case a crisis requires its use or it needs to be updated. Keep a second copy and to make sure that several people know the information is available and how to access it.
  7. Revise Annually (At Minimum): Your child will change, and the letter of intent needs to stay current. The letter of intent should be reviewed and revised at least once a year. So, pick a date that is easy to remember, such as the child’s birthday, to make updates.
  8. Track Updates: Include the date on the original document. Then add the current date to each piece of information that’s added later.

What to Include in the Letter Of Intent

A good rule of thumb is, “When in doubt, include it anyway.”

Personal information about your child known only to you will disappear when you are gone unless this information is recorded.

REMINDER: Clear headings—such as “Medical” or “Financial”—make the document easier to read.
  1. Significant/Traumatic Experiences in Your Child’s Life: Include the good and bad experiences. They could provide clues to current problems.
    • Example: A man with intellectual disabilities always chose to sit in the back seat of a car. Caregivers assumed this was just a preference. One day a new support worker wanted to take him to the store in a pickup truck which had no backseat. The man became very upset and refused to go. This was initially treated as a behavior problem, but in talking with the family, staff discovered that he had been badly hurt in an accident while sitting in the front seat of a car.
  2. Unsuccessful Interventions or Teaching Methods: This ensures past failures will not be repeated.
  3. Medical History:
    • Document all medical issues, even if they have been resolved. They may resurface, so treatment should be described in detail.
    • Include medical background of your child’s family (including the birth family if the child is adopted.) A family history of cancer, heart disease, mental illness, or other conditions will give medical professionals important information if similar issues arise with your child.
  4. Personality Traits: Begin with a description of what people appreciate and like about your child to give future advocates and caregivers a positive outlook. This helps relationships even in the event of a bad first impression.
  5. Routines and Rituals: These help caregivers relate quicker to your child.
    • likes and dislikes
    • social activities
    • assistance needed for daily living
    • small rituals such as setting the table for dinner
  6. Dietary Issues: Ensure safety and comfort.
    • Document allergies and sensitivities.
    • Include favorite meals or treats as well.
  7. Financial Information: All income and accounts, and rules for accessing them, for your child should be included.
  8. Emergency Contact Information:
    • Your phone number(s), e-mail/preferred social media, and mailing address(es)
    • Contact information of close family members and/or friends
  9. Future Plans: Any plans for your child’s future should be included here. Some of this information may be found in other categories, such as Financial Information, but it should be repeated here.
  10. Final Arrangements: This is a tough category, but you need to record any specific arrangements that have been made, or that you want to be made, for your child’s care immediately before, during, and after his or her death.

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